Last weekend, I spent half a day at San Diego Comic Con's Special Edition. I was on a discussion panel, and then I signed some books. It was my first large in-person event since the Covid pandemic, and I was really nervous about attending, but not for the reason you might think.
In January, 2021, during the peak winter surge of Covid-19 in California, I went to the grocery store to buy a cake for the presidential inauguration. I wore a cloth mask and gloves. Four days later, I developed a sore throat, a low fever, and tested positive for Covid.
I spent two weeks isolating in my bedroom. Thankfully, no one else in my family got sick. I went through many of the typical symptoms - fever, body aches, loss of smell, mild shortness of breath - but I recovered. My oxygen levels were fine. I didn't end up in the hospital. My nose started working after three weeks. All things considered, I got off easy.
Four weeks after I tested positive, I went on a half-mile hike. I developed some chest pressure after and was advised to lay off the exercise for a while. A couple weeks later, my first novel was published. My time and energy were consumed by promoting my book and all the excitement of being a debut author. My chest pain eased, and I gradually ramped up my activity with gentle yoga and short walks. By mid-April, I felt fine.
Then came the weekend where I was a guest of honor at a virtual convention. I was thrilled, of course, and glad to participate as much as I could. I spent hours on Zoom doing panels and other live interactions. Three days later, I found myself too weak to hold myself up while preparing dinner. My heart pounded. My chest hurt. I felt nauseated. I thought I was having a heart attack, except that it lasted for hours.
A trip to urgent care showed a clean ECG and chest x-ray. I found a Covid recovery clinic nearby with a doctor who listened and took my symptoms seriously. (Far too many people are dismissed as having panic attacks or anxiety.) They ran me through a comprehensive set of tests. The only medically detectable problem was a mild reduction in gas exchange in my lungs. The ultimate diagnosis: the syndrome often called "Long Covid." The doctor handed me some pamphlets on ME/CFS, pacing, and managing my energy envelope.
I've had to deal with various physical impediments for much of my life, but until this year, they've all been treatable in some fashion. Glasses and contact lenses for my severe myopia. Enzyme pills for lactose intolerance. Botox, pain meds, and trigger avoidance for chronic migraines. Lifestyle changes to mitigate TMD and GERD. But what I have now can't be treated, avoided, or cured.
I spent much of the 2021 summer reading, experimenting, and learning. I started wearing a Fitbit and religiously tracking my steps. I set a low heart rate threshold to track my stress and activity levels. I figured out what my limits are, and at what rate I can increase them without triggering another relapse. It took four months to go from 2000 steps per day to 3500 steps per day. Ordinary activities that I used to take for granted now make me tired: showering, washing dishes, laundry, sitting upright, talking, thinking. Multi-modal activities like video games or Zoom chats are even worse. I can't even contemplate hiking, biking, travel, or many of the other activities I used to love.
My family and friends kept hoping that after I got both my vaccinations, or after some time and rest, that I'd improve. I did, too, which is why I haven’t spoken publicly about this until now. Unfortunately, the opposite has happened. My constellation of symptoms has increased over time. Extended inactivity has made me weak. Physical therapy gave me persistent muscle aches. Off-label medication has had no effect. Whatever this is, Long Covid or ME, it's here to stay.
From the reading I've done and the people I've spoken to, having ME is often a process of learning how to unwind from expectations, set realistic goals, and maintain good habits. It can take years to understand your limits and then to gradually rebuild your life. You're always at risk of pushing too hard, too fast, and falling into a relapse. Ordinary illnesses are amplified. Daily rest is a necessity. I've spent the past six months understanding and internalizing this.
I'd hoped that I understood my limits well enough to handle the exertion of San Diego Comic Con. It was within an hour's driving distance. I wasn't planning to do anything resembling my usual level of convention activity, and this Special Edition version was uncrowded and easy compared to pre-pandemic versions. I allowed myself plenty of time to walk slowly, rest, eat, and stay hydrated.
It wasn't enough. After avoiding a relapse for four months, I ended up spending several days lying on the couch, exhausted, achy, and unable to do much of anything other than the essentials.
The World Science Fiction Convention is coming up in December in Washington, DC. It's the annual gathering of people who love science fiction and fantasy literature. I was really looking forward to seeing friends, colleagues, and fans, and to attending the Hugo Award Ceremony as a double nominee.
Unfortunately, my experience in San Diego has made it clear that attending WorldCon would be a massive detriment to my health. Talking through a mask makes my lungs ache. Being mindful of my energy level means saying no to three quarters of the activities I'd want to do. Walking across an airport terminal is equivalent to my full daily step count. Add in the latest Covid variant, the reports of angry anti-maskers on airplanes, and the dearth of taxi drivers, and it just doesn't sound fun anymore, and that's the main reason I go to conventions.
Am I disappointed? Of course! But I can't keep living as if good health is around the corner. Ten months have passed since I first got sick, eight since my first big relapse. This is no longer an illness. It's not transient. It's not a thing that gradually resolves over time. It's a disability, with periods of remission and relapse, that could last for the rest of my life.
On the plus side, such as it is, this not a progressive condition like Parkinson's. It won't get worse as long as I take care of myself. And because of the sheer number of people affected by long Covid, real money is going into researching the problem, unlike ME/CFS, which has been neglected for decades. Maybe in a few years, we'll understand both disorders better.
So what now? I focus on the things I can do: write books, drive my kid to school, eat, shower, do the laundry. I'll work on gradually rebuilding my strength at a pace that my body will tolerate. I'll keep my socializing short, take road trips where I can lie down across the back seat, and prioritize my health above all else. I should eventually have periods of remission, perhaps lasting for years. Until then, everything else is on hold.
If you'd like to donate to research on ME/CFS and Long-Covid: https://solvecfs.org/